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The ALSFRS-R Summit: a global call to action on the use of the ALSFRS-R in ALS clinical trials.
Genge, Angela; Cedarbaum, Jesse M; Shefner, Jeremy; Chio, Adriano; Al-Chalabi, Ammar; Van Damme, Philip; McDermott, Chris; Glass, Jonathan; Berry, James; van Eijk, Ruben P A; Fournier, Christina; Grosskreutz, Julian; Andrews, Jinsy; Bertone, Vanessa; Bunte, Tommy M; Couillard, Mathias; Cummings, Cathy; Kittle, Gale; Polzer, John; Salmon, Kristiana; Straub, Corey; van den Berg, Leonard H.
  • Genge A; Montreal Neurological Institute-Hospital, ALS Center of Excellence, Montreal, Quebec, Canada.
  • Cedarbaum JM; Yale School of Medicine, Section of Movement Disorders, Coeruleus Clinical Sciences LLC, Woodbridge, CT, USA.
  • Shefner J; Barrow Neurological Institute, Phoenix, AZ, USA.
  • Chio A; Department of Neuroscience, University of Turin, Torino, Italy.
  • Al-Chalabi A; Department of Basic and Clinical Neuroscience, King's College London, Institute of Psychiatry Psychology and Neuroscience, Maurice Wohl Clinical Neuroscience Institute, London, UK.
  • Van Damme P; Department of Neurology, KU Leuven, Leuven, Belgium.
  • McDermott C; Department of Neurology, The University of Sheffield, Sheffield, UK.
  • Glass J; Department of Neurology, Emory University, Atlanta, GA, USA.
  • Berry J; Massachusetts General Hospital, Neurology, Boston, MA, USA.
  • van Eijk RPA; Department of Neurology and Biostatistics, UMC Utrecht Hersencentrum Rudolf Magnus, Utrecht, Netherlands.
  • Fournier C; Department of Neurology, Emory University, Atlanta, GA, USA.
  • Grosskreutz J; Precision Neurology of Neuromuscular and Motoneuron Diseases, University of Lübeck, Lübeck, Germany.
  • Andrews J; Columbia Presbyterian Medical Center, Neurology, New York, NY, USA.
  • Bertone V; Montreal Neurological Institute and Hospital, McGill University, Montreal, QC, Canada.
  • Bunte TM; Department of Neurology, UMC Utrecht Hersencentrum Rudolf Magnus, Utrecht, Netherlands.
  • Couillard M; Montreal Neurological Institute and Hospital, McGill University, Montreal, QC, Canada.
  • Cummings C; International Alliance of ALS/MND Associations, Northampton, Northamptonshire, UK, and.
  • Kittle G; Barrow Neurological Institute, Phoenix, AZ, USA.
  • Polzer J; QurAlis, Cambridge, MA, USA.
  • Salmon K; QurAlis, Cambridge, MA, USA.
  • Straub C; QurAlis, Cambridge, MA, USA.
  • van den Berg LH; Department of Neurology, UMC Utrecht Hersencentrum Rudolf Magnus, Utrecht, Netherlands.
Amyotroph Lateral Scler Frontotemporal Degener ; 25(3-4): 382-387, 2024 May.
Article en En | MEDLINE | ID: mdl-38396337
ABSTRACT
The Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS) was developed more than 25 years ago as an instrument to monitor functional change over time in patients with ALS. It has since been revised and extended to meet the needs of high data quality in ALS trials (ALSFRS-R), however a full re-validation of the scale was not completed. Despite this, the scale has remained a primary outcome measure in clinical trials. We convened a group of clinical trialists to discuss and explore opportunities to improve the scale and propose alternative measures. In this meeting report, we present a call to action on the use of the ALSFRS-Revised scale in clinical trials, focusing on the need for (1) harmonization of the ALSFRS-R administration globally, (2) alignment on a set of recommendations for clinical trial design and statistical analysis plans (SAPs), and (3) use of additional outcome measures.
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Texto completo: 1 Banco de datos: MEDLINE Asunto principal: Esclerosis Amiotrófica Lateral Límite: Humans Idioma: En Año: 2024 Tipo del documento: Article
Texto completo
Imprimir
XML
PubMed Links
Search on Google

Texto completo: 1 Banco de datos: MEDLINE Asunto principal: Esclerosis Amiotrófica Lateral Límite: Humans Idioma: En Año: 2024 Tipo del documento: Article